Rift in Disability Studies

The U.S. Supreme Court today will hear arguments about a federal challenge to an Oregon measure that allows physician assisted suicide in certain cases.

The case has divided many medical ethicists -- and also scholars in the growing field of disability studies. In May, the Society for Disability Studies joined 11 disability rights groups in submitting a brief to the Supreme Court opposing Oregon's system as one that had the potential to devalue and damage the lives of people with disabilities. But while the press release announcing the brief proudly includes the Society for Disability Studies, the brief itself no longer does so.

That's because the society found itself facing criticism from many of its members, some of whom thought the Oregon policy was not as bad as others argued. But beyond the specifics of the Oregon case, some professors argued that the scholarly society had no business taking a stand on an issue like this on which there was no scholarly consensus, that the society hadn't followed proper procedures to take such a stand, and that a form of political correctness made it hard for professors to speak out in opposition to the brief or to stands taken by some prominent disability rights groups, such as Not Dead Yet, which organized the brief in question.

As a result, the Society for Disability Studies withdrew its support for the brief and is taking no official stand on the Oregon dispute.

However, some scholars continue to think that it would have been appropriate for the society to have participated in the Supreme Court case. And leaders of the society strongly deny the charge that there is any sort of party line with regard to what disabilities scholars can say.

The issue, which has prompted flurries of e-mail exchanges and intense discussions among professors, is a sensitive one for the field. Disability studies is a hot interdisciplinary focus of research in academe, involving scholars who study legal, medical and social issues, as well as professors who look at the history of people with disabilities and how they are portrayed in literature and the arts.

Many scholars in the field have disabilities or have family members with disabilities. And there is a strong sense of activism for many in the discipline because nearly all of its members -- including people on both sides of the Oregon dispute -- agree that people with disabilities regularly confront bigotry and people who would deny them control over their lives.

Add in the fact that assisted suicide reminds many people of Nazi-sponsored eugenics and you have a combustible situation.

Rosemarie Garland-Thomson, an associate professor of women's studies at Emory University and the co-editor of Disability Studies: Enabling the Humanities, says that one irony of the debate is that the rationale for assisted suicide and the rationale behind the positions of groups like Not Dead Yet can be viewed as "quite similar" in that both are focused on "the right to control one's body."

One of the professors who raised objections about the society's role in the case was Lennard J. Davis, a professor of English at the University of Illinois at Chicago and the author of numerous books and articles about disability, including a highly praised memoir about being raised as the hearing son of deaf parents.

When Davis first heard about the scholarly society signing the brief, he said, he was surprised that there had been no discussion about it. Davis said that the Modern Language Association, for example, has specific procedures for seeking member input before taking public stands. And after Davis started raising questions about the brief, he said that leaders of the society discovered bylaws that might have been violated in signing on to the brief.

Davis said that he was pleased that the board of the society had withdrawn its support from the brief. But he said that the dispute raised broader issues about the field, in which he has been an activist, helping to found the MLA's Committee on Disability Issues and the Profession, for example. Many of the founders of disability studies, Davis said, "cut their teeth on issues around euthanasia so it has come to be an almost binding rule that if you are in disability studies, you will oppose physician assisted suicide."

Such a rule, Davis said, is "appalling" in academe. "There is an enforced conspiracy of silence that makes it difficult to speak out in favor of physician assisted suicide for fear of being seen as being against people with disabilities. I can do it because my job is secure, but many junior folks and grad students have told me that they would support my position but they are afraid. Ditto for even some of the most well known people in the field."

To be clear, Davis and others are absolutely not in favor of euthanasia and are outspoken in criticizing the medical establishment generally for taking too many decisions away from people with disabilities.

But privately, some disability scholars say that the Oregon law should be viewed as a reasonable way to help some people with terminal illnesses who wish to avoid the pain of certain diseases that will soon take their lives. Given the protections against the Oregon law being used against anyone who does not want to end his or her life, they say that the measure need not be viewed as an attack on people with disabilities.

The brief that the society briefly endorsed does say explicitly that assisted suicide is an attack on people with disabilities. The brief signatories wrote that their "experience as people with disabilities is that the false assumption that suicide is a rational solution to the barriers and discrimination they face devalues them as human beings and sanctions their unequal treatment under law."

James Ferris, president of the society and a faculty associate in communication arts at the University of Wisconsin at Madison, said that he continues to back the brief personally. "It makes a very compelling argument," he said.

He said that he supported the decision to withdraw support for the brief because of the "lack of clarity" about how the society could take a stand on a Supreme Court case. Ferris said that he appreciated the view that some sort of participatory process was needed before a scholarly group took a public stand. But he also said he feared that creating a long process could effectively mean that the society would stay out of court cases, since requests to join a brief are frequently made under tight deadlines.

It would be a shame, he said, if disability studies professors couldn't take united stands on some issues. "Part of our mission is to have an impact on the world," he said.

Ferris strongly rejected the assertion that there are any ideological tests imposed on people in the field. "We have people who agree on some issues and who disagree on others, as you'd expect," he said. "We have plenty of room for people who hold a wide range of perspectives."

The idea that scholars would have their views excluded would be particularly wrong for disability studies, he said, "because our fundamental idea is promoting inclusion."

One academic group -- the Center on Human Policy, Law, and Disability Studies, at Syracuse University -- is still publicly supporting the brief filed by Not Dead Yet. Steven Taylor, co-director of the center and coordinator of disability studies at Syracuse, said that there were several reasons to be involved in the case.

"People with disabilities are extremely vulnerable when physician assisted suicide is sanctioned," he said. He said that many people in the public confuse "end of life care" and "life sustaining care" in ways that can encourage them to view people with disabilities as not deserving of medical treatment that keeps them alive. Physicians "share cultural attitudes toward people with disabilities held by other members of society and often make 'quality of life' determinations when deciding on whether or not to provide care," Taylor added.

He also said that people who study and promote disability rights "cannot forget the societal attempts to eliminate disability through involuntary sterilization -- tens of thousands of people with disabilities were involuntarily sterilized up until the 1950s and 60s and perhaps later -- restrictive marriage laws, and other policies and practices."

Emory's Garland-Thomson said that history does play a role in how people with disabilities and scholars familiar with history view the Oregon situation. While she did not equate Oregon's policies with the euthanasia practiced in Nazi Germany, Garland-Thomson said that "the same kind of rhetoric" has been used in both cases. She also said that many people do not realize just how vulnerable people with disabilities have been -- and continue to be -- to those who do not consider their lives to have value.

Garland-Thomson, whose term on the board of the disability studies society recently ended, said that she personally "leaned toward" supporting the views expressed in the Not Dead Yet brief. But she said that she didn't think the society had any choice but to withdraw its support, given the procedural issues that were raised.

She also noted that there were really two questions at play: the Oregon approach and the question of whether the society should weigh in. It is possible, she said, to oppose physician assisted suicide and still have qualms about the society getting involved in the case.

The debate that has grown out of the discussion is healthy for the field, she said. While Garland-Thomson said that she was not certain herself that people were reluctant to speak out in ways that differ on the issue of assisted suicide, she said she was concerned "by the belief of some that they face pressure to think in certain political ways and that if you do not, you are not a good disabled person."